What (not) to say and why: tips and advice for everyone

If a person acquires facial palsy, not only do they lose the ability to use their face as they have previously; but they also acquire additional ‘invisible’ symptoms.

Knowing what to say is very difficult, and sometimes even if you think you are saying something that you believe is positive, it may have the opposite effect on that person. People in the Facial Palsy community often report that well-meaning comments like ‘you are looking much better’ or ‘I can hardly tell’ can actually make them feel worse rather than better.

We know that the level of ‘severity’ of facial weakness is not correlated with the level of psychological distress one might be experiencing.

“I find this a lot. Comments are well-meaning and caring and I think sometimes people would have no idea that what they say could be a little bit hurtful. I think people also don’t want to then counter the comment for fear of being accused of being negative.”

We asked our community about these comments – and they shared what they often hear and what they would like to hear. A person with facial palsy may show you their ‘Claire’s card’ if you ask them questions they don’t want to answer. This is a credit card-sized information card (shown below). You can see that some people may be happy to tell you more or to answer your questions; but others may not want to.

Physical Effects of Facial Palsy

A person with facial palsy will be experiencing many of these physical symptoms:

Source: Symptoms of Facial Palsy – Facial Palsy UK

These symptoms can affect:

• Communication (facial expressions, speech)
• Eyes: pain, difficulty showering, difficulty sleeping, being red and sore, choice of outing (e.g. cinema / theatre, heating / air conditioning that may dry the eye further), involuntary eye closure when smiling
• Eating: biting inside of cheek/lip, keeping food and drink in the mouth, food collecting in the cheek
• Kissing: this might make it difficult to start new relationships, or cause anxiety around dating.

“I appreciate it when someone asks if they’re on the correct side for me to hear and see them.”

For some, facial palsy has occurred following treatment for a serious health issue, like a brain tumour. They hear comments such as:

“Your facial palsy should be the least of your worries, you should just be proud of how much you’ve survived in the last four months.”

Although this comment is celebrating recovery achievements, people may feel like the significance of their facial palsy is being minimised. There are an array of physical and emotional symptoms experienced alongside facial palsy, and these have a big impact on how the person is feeling.

“It’s not just about appearance to others! It can be so horribly uncomfortable too & the loss of your smile is so emotionally hard to accept. Well-meaning people will also try & give you advice about ‘working on it’ as if you’re not! Also very upsetting.”

“Some friends have said that it doesn’t matter how I look, I’m still the same person inside which comes from the heart and that I appreciate.”

Some people are born with facial palsy. Comments suggesting successful treatments (e.g. ‘Steroids should cure it’) and queries about recovery (e.g. ‘Can they fix it?’) can be hurtful. Being mindful of the cause of someone’s facial palsy could help direct the conversation.

“I hate when people say “Will they be able to fix it?” That sounds awful to me because she’s not broken.”

– parent of a child with facial palsy

Emotional Effects of Facial Palsy

People living with facial palsy demonstrate great resilience in managing the day-to-day challenges. However, facial palsy does lead to emotional issues too.

Self-esteem: People with facial palsy often experience a reduction in self-esteem. This can be a consequence of how they feel about themselves and also how people react to them. They may feel a sense of loss, especially since appearance and speech are often a large part of people’s identity. They may find themselves making comparisons not only with the appearance of other people, but also with their own appearance, or their own appearance before the onset of facial palsy. Comparisons like these can often have a detrimental effect on one’s mood.

“People assume you must be happy because it’s not “as bad as it was”

Anxiety and depression: People with facial palsy often suffer from anxiety or depression. The severity of facial palsy does not consistently correlate with psychological impact.

“You are so hypersensitive – there’s nothing wrong with your face”

“I forget which side you have that”

Many members said they’d prefer to be asked ‘How are you feeling?’ rather than being told that their facial palsy is hardly noticeable now as it displays care rather than judgement.

One way that people cope with feeling anxious is to isolate themselves. In the short term this can help them to feel less anxious, but in the longer term this can lead to feelings of exclusion. Being unable to relax and laugh without being stared at can have a significant impact on people’s lives. Working hard to maintain confidence can lead to fear and avoidance of new experiences and meeting new people.

Connecting with others: Smiling is key to communication and forming relationships. It is a universally recognised greeting. Forming new relationships can be difficult when a person cannot show emotion on their face.

People with a facial difference are often on guard about showing emotions, like smiling or crying. If people feel conscious of their facial palsy they may try to hide their smile, limit eye contact or turning their body away. However, doing these things can reduce the quality of the social interaction, and the ease of conversations.

“Talk to me how you would like to be talked to.”

Alternative forms of communication are useful: direct eye contact, speech and using more gestures and non-verbal communication. You will still be able to pick up on the emotional cues of your close friends and family.

The world of social media places extra strain on people with a facial difference: photographs are such a key focus of our experiences, particularly for the younger generation. A night out with friends might be ruined by the concern of a photo that may be posted. People often do not fully relax in social situations as they are occupied with trying to find a balance between enjoying themselves whilst hiding their facial palsy.  You can find tips for taking photographs here.

“Especially when someone wants to take a photo & they ask you to smile, with teeth!!! Honestly, I really haven’t worked out how to respond to this yet. It is really frustrating. It’s like telling someone who is in a wheelchair to just get up & walk!! But it’s not just what is visible to others. It’s also how you feel inside.”

“It’s about my self-confidence and self-esteem. Not just about how I look.”

Stigma: Around the age of 6-8 years, children and their peers will show more awareness of differences. These feelings can present more challenges and experiences of stigmatising behaviour as a child grows older. Stigmatising behaviours, such as unkind comments, or exclusion from certain situations, can affect adults as well as children.  Comments like ‘What is wrong with your face?’ increase stigma. If interested, try to ask in a more positive way. When inquiring about someone’s visible difference, approach the conversation with empathy and respect.

Here are some tips:

Stages of Recovery

From the outside, facial palsy may seem to be appearance-based. However, the range of symptoms (both physical and emotional) requires a lot of energy to deal with. After a facial nerve injury, most people will typically experience a similar pattern of recovery, regardless of the cause. However, there are some exceptions which apply to the following groups, such as those with congenital facial palsy, people who have their facial nerve completely severed, and people who have undergone nerve grafts.

Apart from these groups, the majority of people showing clear signs of recovery within three weeks of their initial symptoms will quickly progress through the following stages:

1. Flaccid stage: weak and floppy muscles.
2. Paretic stage: muscles will begin to resume their prior shape and tension and small spontaneous movements will be noticed.
3. Full recovery is made within the first 12 weeks after the onset of symptoms.

If a person has experienced delayed recovery after an acquired facial palsy, the person will progress through the following journey. The duration of each stage will vary between individuals depending on the degree of nerve damage.

1. Flaccid stage: upon the onset of facial paralysis, the facial muscles will lose their tone or tension to become weak and floppy.
2. Paretic stage: As the nerves begin to recover, the facial muscles will begin to return to their prior firmness and shape. This will show as an improvement in resting facial symmetry.
3. Synkinetic stage: Synkinesis means the development of unwanted or involuntary movements. For example, when smiling, the eye on the affected side may shut involuntarily.

There are daily exercises, massages and stretching which can be done at each stage. As well as a need to relax the face daily. This physical therapy takes time and effort, with sometimes very minimal visible results in the short term which may be demotivating.

“People tell me, ‘Oh your face is better!’ then add, ‘It’s nearly a year now, it should have recovered’. I have synkinesis – when I chew or smile my eye closes, constant daily exercises and stretches, ear pain, face pain, still unable to drink without a straw, eat properly without food escaping, but they tell me ‘Oh your face is better!’ It does upset me.”

Being aware that the person may be experiencing a delayed recovery, despite doing lots of physical therapy, will help you to understand how the person may be feeling.